It's been awhile since I've posted... I'd like to say I've been too busy doing something incredibly worthwhile to be spending time on the computer... but the reality is I've been kind of flitting from project to project and haven't had much energy for any of them.
We did have our pumpkin give-away this past week, and gave away probably 25 pumpkins... I still have a few left so if you know me IRL and would like a pumpkin (or another pumpkin!) let me know!
I mostly posting now because I have a dilemma, a situation has come up that I've never had to deal with before...
Here's the background:
M receives SLS (supported living services) through our county CCB (community center board). He's very lucky to get it... because of huge funding issues, when people become eligible for SLS (upon turning 18) they generally go on a VERY long wait list. It is years, decades, before they reach the top of the list and start receiving services. Because of the severity of M's disabilities though, he was moved to the top of the list when he turned 18. SLS doesn't really get us a whole lot, we don't use the day program they'd pay for, for example... we're pretty used to doing things ourselves. It's an important safety net though for M... if something happened to me, SLS is already in place to provide some of the support I would no longer be able to provide.
To keep M's SLS we have to use at least one SLS service each month. M's plan includes hippotherapy, respite, and even a few hours of housecleaning (of the areas M uses) each month. M hasn't been able to do hippotherapy lately because of his hip, and he's been having trouble with the respite provider, so to keep his SLS I've been having a local agency (that works with the CCB) do a cleaning each month.
Honestly, I hate having someone in to clean... but I can't chance losing M's SLS. Once it was gone it could be years before he'd get it back.
So... on Tuesday a girl from RT (the agency that contracts with the CCB to provide this service) came to clean. I told and showed her what I needed done and let her go. R was gone shopping with E (dd#1), and M and I did school up in the classroom while the cleaner worked in the main part of the house. She was in the kitchen dusting up high at one point when I came out, and her big cleaning supply bin was sitting on the kitchen counter under the east window. I went back into the classroom and shortly after she came in and said she was done. She still had 90 minutes left of the time she was contracted to be here, but she insisted that she's "a fast cleaner" and everything was done. So I thanked her and she left.
I came out later and found that some of the things I'd asked her to do, hadn't been done... but I didn't think much of it because the last girl who had cleaned had also "missed" a lot.
The next day (yesterday) I was doing laundry and found some change in the washer... I brought it upstairs and went out to the kitchen to put it in the change jar the kids and I keep on the kitchen counter. It's a cool little thing I got to be a learning tool with the kids (especially R). It's a plastic jar with an electronic slotted lid that keeps track of how much change is in the jar, and each time you put a coin in a readout on the lid tells the value of the coin and the current total for the entire jar. Anyway... I went to put the coin in and the jar was gone.
I asked Joe if he'd moved the jar (something that's hugely unlikely because it's been just the kids and my little project) and he said of course not. It always sat on the kitchen countertop in the corner under the east window... but I looked in the kitchen cabinets, on the frig, IN the frig, anywhere in the kitchen I thought the girl who cleaned might have put it.
It's not here, and nothing else on the counter was moved or put away.
And the only non-family person who has been in the house was the girl who cleaned.
I called the agency who sent her and said the jar was missing and if she put it someplace she needed to let me know where it was. They finally called me back at 9:15 last night and said they hadn't been able to reach her yet but would keep trying. I told them if the jar was not somewhere in my home, if there wasn't a reasonable explanation for where it ended up, I would be calling the police this morning. There wasn't a lot of money in the jar ($60.+) but I'm wondering now, if she took the jar what else she might have taken? (Luckily, we don't have much that worth anything! ;)
Another worry is that a paper I'd received in the mail that day, about M's benefits, was laying on the kitchen table and it had both his social security number and full name on it. Had she written down that information down and taken them too? M's legally an adult now, now much trouble could someone cause misusing his SS#?
On the other hand though... it doesn't make sense. Why steal a jar of change... It's sure to be missed. Why jeopardize your job and your life for a plastic jar of change?
But there is no where else it could be. It sat on the counter because it was just a little too tall to fit anywhere else... And I wouldn't have moved it anywhere without thinking because it had gotten SO heavy, and I got a nasty cut on the back of my hand on Monday and was primarily one-handed for the early part of the week. I couldn't physically have moved it one-handed. I know M and R didn't take it... they don't steal. I know stealing often seems to go with FASD, but neither M and R EVER steal. (If M wants something that's not his, he just asks for it! :) And because of M's need for close supervision, we spend most of our time in the main part of the house... so even if one of them did suddenly try something completely out of character... there just wasn't the opportunity.
We've been gone to town a couple of times this week, but the dogs have been in the house and I can't imagine anyone going past three wildly barking dogs (with Emmaon top of them "smiling" and sneezing), through the house to the kitchen, and taking only a jar of change.
None of this makes sense.
It's almost morning and I'm trying to decide what to do... Call the police? Let it go? (The agency has already said they would repay anything missing) The girl who cleaned was young, probably early 20's and has a young child... If she took it, how much must she need the money? If she took it she must need it more than we do...
Maybe I should skip calling the police and let the only consequence to her be the problems she will have at work... Sixty dollars isn't enough to possibly mess up some one's life for...
But if there are problems later in terms of M's SS#, maybe I need to have the documentation of a police report that his personal information might have been compromised?
Aghhhhh! What to do...
I'd welcome opinions... What would you do?
Showing posts with label Supports. Show all posts
Showing posts with label Supports. Show all posts
Thursday, October 20, 2011
Thursday, September 30, 2010
It's been awhile... (long catch up post)
... since I posted.
Life has been moving at warp speed this summer, and in all the busy-ness, I'm afraid blogging ended up left by the wayside...
Here's a little of what's we've been up to:
We finished up the meetings and paperwork to move M into adult developmental disability services. Outwardly, nothing has changed... which was my goal... to keep things just the same for him. He now is getting services through the "adult side" though and his Medicaid has changed to long-term Medicaid, coverage he should be able to keep for many years.
I spent a week earlier this month preparing for our meeting with SSI to get M qualified for benefits. Countless hours went into filling out the online application (with his complete medical/psychiatric history) and gathering all the paperwork to document his disabilities and medical issues. The hours paid off though... he's already been approved! That's one BIG thing I'm happy to cross of my to-do list...
I also spend a fair amount of time figuring out the paperwork to apply for guardianship for him. It wasn't as time consuming as the SSI application, but I did have to fill out a bunch of legal documents... twice... since I filled out most of them wrong the first time. I got everything done though, and submitted to the court... Our hearing is in about a month, and I'm sure they'll approve the guardianship. That's another big job happily crossed off the list!
I'd finally got around to shopping for carpet, staying pretty well within the budget I set for this last major upgrade on the house. It was in town within 10 days of placing the order, and installed less than a week later. It was HARD work for the kids and I to move all the furniture out of the house (and move it all back in the next day) but it looks soooo much better than the nasty pink carpet we'd lived with for years... it was worth every loaded-down-with-furniture trip up the stairs.
As long as I was at it, I decided to fix up the kid's little computer niche, something I'd been meaning to do almost since I moved the computer upstairs. A little spackle, some little leftover paint, and an afternoon's work and it looks much better.
I also (impulsively) decided to paint the kitchen island. I really should stop reading This Old House magazine... this is another little project, like my chalkboard wall, that came directly from the pages of this month's TOH. I like how it turned out, but didn't expect it to take several days to paint... (having to remove all the hardware and the five coats of paint it needed slowed me down some).
Before...
I also decided to enroll R in COVA. (Colorado Online Virtual Academy - a public online school) I don't know what I was thinking... it seemed like a good idea at the time, but I think it was primarily a case of the homeschool guilts, feeling like maybe I wasn't doing enough... teaching enough. As it turns out though, we aren't going to do COVA after all... there were just too many problems with the IEP process, and it was reminding me too much of the terrible experiences we had years ago with (brick and mortar) public schools. After a string of several minor, but revealing, bad experiences with COVA staff around R's IEP I withdrew her from the program before she even started any coursework, and we are happy to once again be completely independent homeschoolers.
I wrote the following to a friend of mine about the experience...
"I remember perfectly now, why we homeschool... It's because of the people who were in charge of my children's education... but didn't "get" FASD, and failed to recognize their disability, unintentionally triggered behaviors and problems (because they didn't understand FASD), wasting my children's precious learning and attention time with tasks that were pointless and led to absolutely NO learning, and treating me as much less than a valued member of the IEP team... and more like someone who has to be put up with and could very easily be disregarded."
Speaking of education, Cody is now on his way to becoming an educated dog. After reaching new heights of naughtiness, I enrolled him (us) in a beginning dog training class. I was embarrassed at first, he was NOT the star of the class... he was more like the example of how not to behave. Ok... so maybe he wasn't that bad, but he definitely had a ways to go... Fast forward 2 1/2 months and he's a graduate of the beginner class and is more than halfway through the intermediate class. He sits, lays down, stays, comes, no longer pulls on the leash (most of the time), "leaves it" (when food or something is dropped), heels, high five's (he's too cool to just "shake"), rolls over, goes to his bed, and is just becoming a joy to be around. He really seems to love learning new things. And the best part is his naughtiness is almost gone and he's turning out to be a great little dog!
Fortunately Cody's NOT so well trained that he's given up stealing our shoes, slippers, etc. as a sneaky way to get us to chase him and play with him...
Tucker is also becoming a more educated donkey... R has been working with him this summer and he's made a lot of progress... He now will allow a fly mask on his face, and R has even tacked him up with a little pony saddle we have. At this point she's not getting on him, but she is leaning onto the saddle... putting a little weight on it... and except for a little bucking one time, he's doing ok with it. She loves working with him so much that she asked if Tucker could be hers... so now he is.
Isn't he handsome? I still think he's just the cutest thing on four hooves....
Our pasture got a little more interesting a few weeks ago, with the addition of Cubby... another donkey. We are "fostering" him... just keeping him until the donkey rescue can find him a home. He came to us chewed up from head to tail (literally!) from fighting with other donkeys, and he looks better now... his wounds are healing... but he's still got a major chip on his shoulder and likes to throw his weight around with the other animals. He also kicks, not at people, but at the other animals, so R and I have had to learn a whole new level of caution when working outside. The rule is pretty much to never get between Cubby and one of the other animals, and if there's trouble... get out of the way!
Tucker (in the fly mask) and Cubby, in a friendly argument over a stick... (yes, they each have one end of the stick in their mouth... and neither will let go!)
We've had another change in our animal population this summer too... Lili the chicken has moved to another home. The kids and I loved her, but it wasn't fair for her to always be alone. I believe most animals need the companionship of their own kind... and since Joe refused to have another chicken around, the only alternative was to get rid of Lili. Luckily I have a friend with banties, and Lili's living there now, happily roosting with a bunch of chicken friends and doing fine.
We had some excitement a month ago or so, when some kids who live east of us accidentally started a fire out back... on a windy day. The fire quickly grew out of control and it was amazing (and horrifying) to watch it racing over the land, pushed by the wind. Despite a couple dozen firefighters working on it, it didn't stop until it hit the road. We were lucky, the wind didn't blow the fire towards us and none of our land was burned... It was an exciting afternoon though, standing outside watching the fire gobble up everything in it's path and praying the wind didn't shift. When it rains now the air smells like a wet ashtray, but I can't complain... a bad smell is nothing compared to losing land, or structures, to a prairie fire.
A little bit of the burnt hillside to the east of us...
It looks like our friend S, who is in foster care, might be moving again soon... possibly to a group home. I've been working with the county human services agency that controls her care, trying to ensure we are able to maintain contact, and our relationship, with her. First they said we'd have to be recertified as foster parents, which I was fine with... and I started all the reading they were requiring as part of the recertification process. Then they decided to be satisfied with getting our fingerprints and doing a background check on us. So that's where things stand now... we are just waiting to see what happens next and hoping that the caseworkers in charge of her care understand how important it is to all of us to maintain contact with S. We go back a long way with her... she is like another daughter to me... I hope DDHS respects that relationship.
I think that's most everything that's been keeping us so busy lately. With the cooler weather life will slow down... and I have to say I'm looking forward to the first cold snap, and the first snow. This summer has been just a little too busy for me.
Life has been moving at warp speed this summer, and in all the busy-ness, I'm afraid blogging ended up left by the wayside...
Here's a little of what's we've been up to:
We finished up the meetings and paperwork to move M into adult developmental disability services. Outwardly, nothing has changed... which was my goal... to keep things just the same for him. He now is getting services through the "adult side" though and his Medicaid has changed to long-term Medicaid, coverage he should be able to keep for many years.
I spent a week earlier this month preparing for our meeting with SSI to get M qualified for benefits. Countless hours went into filling out the online application (with his complete medical/psychiatric history) and gathering all the paperwork to document his disabilities and medical issues. The hours paid off though... he's already been approved! That's one BIG thing I'm happy to cross of my to-do list...
I also spend a fair amount of time figuring out the paperwork to apply for guardianship for him. It wasn't as time consuming as the SSI application, but I did have to fill out a bunch of legal documents... twice... since I filled out most of them wrong the first time. I got everything done though, and submitted to the court... Our hearing is in about a month, and I'm sure they'll approve the guardianship. That's another big job happily crossed off the list!
I'd finally got around to shopping for carpet, staying pretty well within the budget I set for this last major upgrade on the house. It was in town within 10 days of placing the order, and installed less than a week later. It was HARD work for the kids and I to move all the furniture out of the house (and move it all back in the next day) but it looks soooo much better than the nasty pink carpet we'd lived with for years... it was worth every loaded-down-with-furniture trip up the stairs.
As long as I was at it, I decided to fix up the kid's little computer niche, something I'd been meaning to do almost since I moved the computer upstairs. A little spackle, some little leftover paint, and an afternoon's work and it looks much better.
I also (impulsively) decided to paint the kitchen island. I really should stop reading This Old House magazine... this is another little project, like my chalkboard wall, that came directly from the pages of this month's TOH. I like how it turned out, but didn't expect it to take several days to paint... (having to remove all the hardware and the five coats of paint it needed slowed me down some).
Before...
2
After...
Much better I think.
s
I also decided to enroll R in COVA. (Colorado Online Virtual Academy - a public online school) I don't know what I was thinking... it seemed like a good idea at the time, but I think it was primarily a case of the homeschool guilts, feeling like maybe I wasn't doing enough... teaching enough. As it turns out though, we aren't going to do COVA after all... there were just too many problems with the IEP process, and it was reminding me too much of the terrible experiences we had years ago with (brick and mortar) public schools. After a string of several minor, but revealing, bad experiences with COVA staff around R's IEP I withdrew her from the program before she even started any coursework, and we are happy to once again be completely independent homeschoolers.
I wrote the following to a friend of mine about the experience...
"I remember perfectly now, why we homeschool... It's because of the people who were in charge of my children's education... but didn't "get" FASD, and failed to recognize their disability, unintentionally triggered behaviors and problems (because they didn't understand FASD), wasting my children's precious learning and attention time with tasks that were pointless and led to absolutely NO learning, and treating me as much less than a valued member of the IEP team... and more like someone who has to be put up with and could very easily be disregarded."
Speaking of education, Cody is now on his way to becoming an educated dog. After reaching new heights of naughtiness, I enrolled him (us) in a beginning dog training class. I was embarrassed at first, he was NOT the star of the class... he was more like the example of how not to behave. Ok... so maybe he wasn't that bad, but he definitely had a ways to go... Fast forward 2 1/2 months and he's a graduate of the beginner class and is more than halfway through the intermediate class. He sits, lays down, stays, comes, no longer pulls on the leash (most of the time), "leaves it" (when food or something is dropped), heels, high five's (he's too cool to just "shake"), rolls over, goes to his bed, and is just becoming a joy to be around. He really seems to love learning new things. And the best part is his naughtiness is almost gone and he's turning out to be a great little dog!
Fortunately Cody's NOT so well trained that he's given up stealing our shoes, slippers, etc. as a sneaky way to get us to chase him and play with him...
... that would be very sad.
Tucker is also becoming a more educated donkey... R has been working with him this summer and he's made a lot of progress... He now will allow a fly mask on his face, and R has even tacked him up with a little pony saddle we have. At this point she's not getting on him, but she is leaning onto the saddle... putting a little weight on it... and except for a little bucking one time, he's doing ok with it. She loves working with him so much that she asked if Tucker could be hers... so now he is.
Isn't he handsome? I still think he's just the cutest thing on four hooves....
Our pasture got a little more interesting a few weeks ago, with the addition of Cubby... another donkey. We are "fostering" him... just keeping him until the donkey rescue can find him a home. He came to us chewed up from head to tail (literally!) from fighting with other donkeys, and he looks better now... his wounds are healing... but he's still got a major chip on his shoulder and likes to throw his weight around with the other animals. He also kicks, not at people, but at the other animals, so R and I have had to learn a whole new level of caution when working outside. The rule is pretty much to never get between Cubby and one of the other animals, and if there's trouble... get out of the way!
Tucker (in the fly mask) and Cubby, in a friendly argument over a stick... (yes, they each have one end of the stick in their mouth... and neither will let go!)
Tucker won... of course.
We've had another change in our animal population this summer too... Lili the chicken has moved to another home. The kids and I loved her, but it wasn't fair for her to always be alone. I believe most animals need the companionship of their own kind... and since Joe refused to have another chicken around, the only alternative was to get rid of Lili. Luckily I have a friend with banties, and Lili's living there now, happily roosting with a bunch of chicken friends and doing fine.
We had some excitement a month ago or so, when some kids who live east of us accidentally started a fire out back... on a windy day. The fire quickly grew out of control and it was amazing (and horrifying) to watch it racing over the land, pushed by the wind. Despite a couple dozen firefighters working on it, it didn't stop until it hit the road. We were lucky, the wind didn't blow the fire towards us and none of our land was burned... It was an exciting afternoon though, standing outside watching the fire gobble up everything in it's path and praying the wind didn't shift. When it rains now the air smells like a wet ashtray, but I can't complain... a bad smell is nothing compared to losing land, or structures, to a prairie fire.
A little bit of the burnt hillside to the east of us...
It looks like our friend S, who is in foster care, might be moving again soon... possibly to a group home. I've been working with the county human services agency that controls her care, trying to ensure we are able to maintain contact, and our relationship, with her. First they said we'd have to be recertified as foster parents, which I was fine with... and I started all the reading they were requiring as part of the recertification process. Then they decided to be satisfied with getting our fingerprints and doing a background check on us. So that's where things stand now... we are just waiting to see what happens next and hoping that the caseworkers in charge of her care understand how important it is to all of us to maintain contact with S. We go back a long way with her... she is like another daughter to me... I hope DDHS respects that relationship.
I think that's most everything that's been keeping us so busy lately. With the cooler weather life will slow down... and I have to say I'm looking forward to the first cold snap, and the first snow. This summer has been just a little too busy for me.
Wednesday, December 30, 2009
I think my stress level might be a little high...
....yesterday I threatened to sue both our CCB (community centered board - the agency that administers federally mandated developmental disability services) and the Medicaid contractor who was making the modifications to M's room.
I'm not normally prone to fits of anger, but I had one yesterday...
The contractor came, as scheduled, on Monday. He hung the door he was supposed to, had an electrician install the lighting, and left his guys to finish up the drywall work. The most important part of the job... replacing the glass in M's windows with plexiglass... was supposed to be done yesterday.
When the guys were finished (using the word loosely) with the drywall work, the last job of the day, they asked me to come look at it. Unfortunately the texture was a mess... They'd used some canned texture they picked up at Home Depot or someplace and there were places they missed entirely, and places they'd smoothed it so it looked like no texture at all... The patch was supposed to blend into the wall around it, but it wasn't even close. They asked if I wanted it done again, and I said yes. I was on the phone with the pediatrician when they finished the second time... It looked better, but still not good... but I just let it go (rather than cut the phone call short). I asked if they were going to prime the door... they said no.
Ok... I thought to myself after they'd left... so maybe my expectations were too high. I'd expected them to come in do the work, and all I would have to do is put the room back together when they were done. But now I'm left with priming and painting the new door, changing the door knob around (they put it on backwards) and priming and painting the new, poorly textured, drywall. Oh... and they didn't install a dimmer switch either... something I'd wanted done. But again, it's not the end of the world... M can survive very nicely without a dimmer switch.
The straw that broke this camel's back (or, more accurately, triggered threats of lawsuits) came yesterday morning, with the glass guy. He came and looked at the windows and the job order of what he was supposed to do, and said he wouldn't do it. That he wouldn't do a poor job, and that's what it would be if he did the job as ordered. The material ordered was not right, he said, was way too flimsy, and to do the job right would take more money... which would mean rewriting the work order, and going back to the state to get it approved.
Getting it approved through the state could take months... (it's taken more than six months to get the approval for the work we're currently doing!)
Leaving the windows the way they are is a huge safety risk to M.
That's when I got angry...
I called the contractor and the CCB and complained about the poor workmanship on the drywall, and how everything seemed only half finished. I also complained about how the most important part of the job couldn't even be started because the contractor screwed up the work order. I finished by letting them know that if M was hurt as a result of that work not being done, I would take legal action.
I really am not someone who throws anger around like a weapon... using it to get what they want. In fact, I have a pretty low boiling point most of the time.
But don't mess with my kids... that sets me off every time.
So... the contractor is sending his guys back out to prime the door. A supervisor from the CCB is coming out this morning to look at the drywall. And (most importantly!) the CCB has approved the change in the job order for the glass work (somehow absorbing the increased cost). As soon as the guy can come back out, the glass work will get done.
I do feel a little bad about getting angry and making threats...
... but if that's what it takes to get the job done, I guess that's what it takes.
1
I am SO finished with having guys in to work on this house.
Sunday, December 27, 2009
The Christmas marathon is officially over and it feels good...
I do love Christmas, but after all the planning, budgeting, shopping, decorating, more shopping, wrapping, mailing, etc... it's a relief to be on the other side of it all.
Our Christmas was quiet, but nice... two of the three older girls were here (we celebrated with our oldest daughter several days earlier because her family was headed out of town for the holiday), and both girls spent Christmas Eve night with us, even driving through some nasty weather to get here. It was so nice to have most of my "chicks" back in the nest on that special night...
We spent the day at home, visiting, playing games, sledding... and K and I even stole a little time to play guitar together. It was a very nice Christmas... it looked like a Christmas card outside, and we had nowhere to go and nothing to do but enjoy the day.
S wasn't here for Christmas, but came on the 26th and spent the weekend with us. All the kids (M, R and S) were a little unsettled, but (whew!) made it through the weekend without any major problems.
I took the big tree down today, and packed almost all of the Christmas decorations back away again. I did leave the little "fishing" Christmas tree up though, it's so small and cheery... I think I'll just leave it up for awhile.
The "accessibility specialist" workmen are coming tomorrow to (finally!!) start on the modifications to M's room. Since he's identified as being severely disabled and in need of long term care, he's on a special Medicaid plan that will pay for some home modifications. I'm excited to get the work done... but kind of hate to have the house torn up again so soon after putting it back together after the recent countertop debacle. (Something I still need to blog about...) It will be so worth it to get the job done though.
I'll close with a few photos of the "fishing tree"... (a tree dedicated to Joe's love of fishing)
Most of the ornaments are fishing related...
... although I just couldn't resist this little Santa on a tractor!
fd
Saturday, August 30, 2008
reality and illusion
You would think after living with someone with schizophrenia for seven years, I'd be good at recognizing what is reality and what is just an illusion.
But sometimes it's still hard for me...
There are a bunch of thoughts tumbling around in my brain that I'm going to try and make some sense of here. Have patience with me, I'm not sure how successful I'm going to be with this...
M had an appointment with his pdoc on Friday. She hasn't seen him in months, and this was his first appointment at her office at the new Children's Hospital.
I have to confess, after the appointment I felt like crap.
No, worse than crap... I felt like crawling into a hole somewhere and pulling a rock over myself.
I felt an overwhelming sense of heaviness... hopelessness... settle over me.
The feeling lasted all the way home, and for hours afterwards. It finally drifted away as I sat outside watching Blaze, Tilly and Tucker grazing out in the big pasture. As I watched them I realized that what I was seeing, feeling and hearing... the earth, the birds darting about, the dogs sniffing around through the long prairie grass, the steady chewing of the horse and donkeys, the swishing of their tails as the flies buzzed and bothered them... all that is real.
But the shiny new behavioral sciences building at Children's (TCH), the place we'd just returned home from, isn't...
It was with that realization that the heaviness lifted and I started to feel like myself again...
~ ~ ~ ~ ~ ~ ~ ~ ~ ~
I'm going to try and explain this, if I can, because it feels like these thoughts need to come out, but first I have a disclaimer. For the families of children with serious physical illness, TCH may be a lifesaver... it may be real to them, a place full of support and healing. Maybe it's even real to some families of kids with mental illness... I don't know. I can only write about my experiences with TCH, and this post will undoubtedly reflect the rather unique path we've followed in terms of M's treatment...
~ ~ ~ ~ ~ ~ ~ ~ ~ ~
In looking back I realize that the heaviness began settling over me even before the appointment, when I was just walking into the building, and it got worse as we waited for the pdoc. I could see her behind the locked doors of the day treatment unit, chatting with another parent, an acquaintance of mine, while the kids and I waited.
I have to admit, for those few minutes I felt jealous, and angry... For more than a few months, and through some really difficult med changes, I've waited for the pdoc to have a few spare moments to focus on M. Unfortunately, he seems to have dropped completely off her radar screen. So it was hard to watch her chatting (late for M's appointment), so leisurely with another parent.
At that same time I was feeling angry with myself too, because even though I've resisted putting M into day treatment, in a strange way I wanted to be part of that little group... But although I should have felt a connection to both women, because of the choices we have made in terms of M's treatment, I felt both literally and figuratively, locked out.
During the appointment I didn't say much to the pdoc, when she asked me questions I answered her, but that was it. Thankfully, M was talking more than enough to fill up the quiet spaces.
The appointment was a short one, but by the time we walked out to the car, I'd somehow picked up, along with my purse, and my keys, the full heaviness of hopelessness and isolation.
It was only later, when I realized that none of this...
... is real.
That it's an artificial world.
And I don't have to be a part of it, to do the right thing for M.
That this is my real life...
... that this safe, sheltering, comforting place is real, not artificial... it was only then that I began to feel better.
No, this isn't real.
Yes, it exists in brick and mortar, glass and concrete...
The building is impressive, expensive, and tastefully decorated.
But this beautiful building, and the promise of help and support it brings with it, is... much like our whole system of mental health care... just an illusion.
Is there any real and lasting help or support to be found there?
No, I don't think so... at least not for M. He has severe, treatment resistant, schizophrenia... he also has FASD... two disorders that are not generally amenable to treatment. And we've tried virtually all the medications available (only missing some of the older antipsychotics) to treat the sz, in varying combinations and strengths, some several times, so it's not like there is anything left to do in terms of meds.
From what I've seen, any support we might find there would be transient, and paid for by putting M into an environment that includes poorly fitting interventions, and plenty of negative influences.
But still... it's so seductive somehow... to imagine that someone in this bright and beautiful building could make things better, maybe even "fix" things.
And the awareness that they don't have the answers (and sometimes they don't even understand the questions), can be such a heavy burden.
But what helps lift that burden for me is the realization that Woodstone Prairie is real.
THIS is real...
...and yes, so is this.
And M IS learning, growing and thriving in a safe and protected, yet challenging environment. He's surrounded by people who love and respect him, and are committed to walking this walk with him for as long as humanly possible.
We are so blessed that we ARE able to do this... That we don't have to place our trust in systems that are full of promises and good intentions, but where real help and support is just an illusion.
Note: All TCH photos in this post are actual (probably staged) pictures of the new Behavioral Sciences Building, and all Woodstone photos are actual (totally unstaged) pictures of our home (and one of M's favorite restaurant)!
Tuesday, June 17, 2008
decision making time...
Thanks for the prayers for my friend Christiana, I haven't heard any more about how she's doing... I'm hoping the experimental treatments they are starting will be effective enough to reschedule the bone marrow transplant.
The struggle she's been facing for the past six months really puts things into perspective for me... It's hard to fuss and whine about the normal frustrations and stress of life when some you know and care about is fighting so hard just to hold onto life itself...
She is truly a remarkable woman... She walked me through those first few months of M's illness, I don't know what I would have done without her. She's funny, bold, brave, wise, open, accepting, loving and kind. I hope she doesn't leave us too quickly... the world needs more people like her.
Loren-I don't think you would have met her. She was involved with the FASD support group for awhile, but I don't remember her coming to the house when you were there.
So, I still need to post more wedding/Las Vegas pictures... and I will... but not right now.
Warning: This post is about the same old day treatment/inpatient what-to-do stuff I've written about countless times before. If you're tired of hearing me talking myself into and out of things, and rationalizing (or maybe not) the decisions I'm trying to make for M, this is likely to put you to sleep. Sorry. Come back in a day or two and I'll have more wedding pictures posted.
I got a call yesterday from the day treatment program that M's been on the waitlist for.
They have a spot for him.
I kind of wish they didn't...
The only two reasons I put him on the waitlist were 1. to get the pdoc off my back about it and 2. because we needed to get him off the haldol and it appeared there was no way I could do that at home.
But since then I've decreased the haldol by almost 75% and am hoping to stop it in the next few weeks. So that is no longer an issue...
And he's doing really well right now. The past week he's been calm, connected, happy, it's been wonderful. So there really isn't a crisis going on (at least right now)... and the unit is supposed to be for kids and families "in crisis".
I talked to the head of the unit today and wasn't impressed. The last time I talked to her was about 8-9 years ago. She was running a social skills group then and she met with us before deciding whether or not to accept M into the group. After meeting him she decided that he wouldn't be a good fit for her program and that was that. I wasn't hugely impressed at her at that time, but it was a short appointment and we really didn't have much chance to talk.
After talking to her today I'm very concerned about a couple of issues. The first involves her answer to me when I asked how they would adapt their program (they use a program designed for kids with Autism Spectrum Disorders, it's called TEACCH, which stands for Treatment and Education of Autistic and Related Communication Handicapped Children) for M, who isn't autistic (or communication handicapped), but is developmentally disabled by FASD. She answered that the program works with "all kids with special needs".
How can that be? Behavioral interventions for kids with FASD look VERY different from interventions for kids with Autism.
Hmm.... a small red flag started waving in my brain.
Then she asked if M was in a "program" this summer (assuming he was a public school student). I explained that we homeschool, and school year round, although with a lighter schedule during the summer. She replied "Why did you take him out of school?", in a challenging way... not a curious one.
Unfortunately, I stumbled around a bit as I answered her... I was totally unprepared to feel challenged in that way about homeschooling (at least during this first, brief, phone call!).
That's about the time another larger red flag started flapping around wildly in my brain...
I really, really don't want to end up in the position of having to defend our educational choices to a bunch of tdocs who don't know us, and deal with the pressure of them believing M needs a "program"... that homeschool isn't enough for him. That would be really hard on me...
Sigh... what to do.
One good thing that came from the conversation though, is that I'm understanding why all of a sudden the pdoc has started hammering away at me that M needs a "program". Lately, every time things get rough her only answer is that he needs a "program". In the 6+ years she's been his pdoc I never once heard anything from her about his need for a program until about a month ago. During the past month she's mentioned it at least 4-5 times. She's brought it up so often that I got snappy with her about it... I was tired of her answer to everything always being a "program" and let her know that. (She apologized, but has continued to keep bringing it up.)
Honestly though, the homeschool issue could possibly be taken care of fairly easily... hopefully just by clearly stating, up front, that we are NOT interested in finding a program, that we believe homeschooling is the best option for our children, and if that is a problem for them they don't have to admit M.
And M is probably flexible enough right now to cope with a structure (the TEACCH model) that isn't the best fit for him. It does seem a little strange though that he (coming in as the child in need of this level of support!) would need to accomodate them, rather than things being the other way around...
The bottom line for me though, is that I don't think this is going to be helpful to M. I talked to K about it. Her shiny new psych degree, combined with her experience working with kids with mental illness, developmental delays, and behavioral problems, gives her a unique insight sometimes. She is strongly against M going into the NSCU. She sees the issue not of him having behavioral problems, but having a very serious mental illness that has been resistant to treatment. I agree with her take on the situation, which brings me back to this being a medication issue, not an issue that requires behavioral intervention.
I found the following paragraph while I was reading through an article this morning... It looks like treatment resistant sz is more common than I thought.
"The issue of treatment resistance [Treatment Resistant Schizophrenia] is of particular importance for practicing psychiatrists, because 10% to 30% of patients have little or no response to antipsychotic medications, and up to an additional 30% of patients have only partial responses to treatment."
Hmm... so why do we keep coming back to this as a behavioral or environmental issue?
Anyway, the NSCU intake person is working on finding out if our insurance will even pay for day treatment, and we have a tour scheduled for tomorrow afternoon.
The pdoc is gone (a family emergency came up) but I'm hoping to talk to her before I have to make a decision.
The struggle she's been facing for the past six months really puts things into perspective for me... It's hard to fuss and whine about the normal frustrations and stress of life when some you know and care about is fighting so hard just to hold onto life itself...
She is truly a remarkable woman... She walked me through those first few months of M's illness, I don't know what I would have done without her. She's funny, bold, brave, wise, open, accepting, loving and kind. I hope she doesn't leave us too quickly... the world needs more people like her.
Loren-I don't think you would have met her. She was involved with the FASD support group for awhile, but I don't remember her coming to the house when you were there.
So, I still need to post more wedding/Las Vegas pictures... and I will... but not right now.
Warning: This post is about the same old day treatment/inpatient what-to-do stuff I've written about countless times before. If you're tired of hearing me talking myself into and out of things, and rationalizing (or maybe not) the decisions I'm trying to make for M, this is likely to put you to sleep. Sorry. Come back in a day or two and I'll have more wedding pictures posted.
I got a call yesterday from the day treatment program that M's been on the waitlist for.
They have a spot for him.
I kind of wish they didn't...
The only two reasons I put him on the waitlist were 1. to get the pdoc off my back about it and 2. because we needed to get him off the haldol and it appeared there was no way I could do that at home.
But since then I've decreased the haldol by almost 75% and am hoping to stop it in the next few weeks. So that is no longer an issue...
And he's doing really well right now. The past week he's been calm, connected, happy, it's been wonderful. So there really isn't a crisis going on (at least right now)... and the unit is supposed to be for kids and families "in crisis".
I talked to the head of the unit today and wasn't impressed. The last time I talked to her was about 8-9 years ago. She was running a social skills group then and she met with us before deciding whether or not to accept M into the group. After meeting him she decided that he wouldn't be a good fit for her program and that was that. I wasn't hugely impressed at her at that time, but it was a short appointment and we really didn't have much chance to talk.
After talking to her today I'm very concerned about a couple of issues. The first involves her answer to me when I asked how they would adapt their program (they use a program designed for kids with Autism Spectrum Disorders, it's called TEACCH, which stands for Treatment and Education of Autistic and Related Communication Handicapped Children) for M, who isn't autistic (or communication handicapped), but is developmentally disabled by FASD. She answered that the program works with "all kids with special needs".
How can that be? Behavioral interventions for kids with FASD look VERY different from interventions for kids with Autism.
Hmm.... a small red flag started waving in my brain.
Then she asked if M was in a "program" this summer (assuming he was a public school student). I explained that we homeschool, and school year round, although with a lighter schedule during the summer. She replied "Why did you take him out of school?", in a challenging way... not a curious one.
Unfortunately, I stumbled around a bit as I answered her... I was totally unprepared to feel challenged in that way about homeschooling (at least during this first, brief, phone call!).
That's about the time another larger red flag started flapping around wildly in my brain...
I really, really don't want to end up in the position of having to defend our educational choices to a bunch of tdocs who don't know us, and deal with the pressure of them believing M needs a "program"... that homeschool isn't enough for him. That would be really hard on me...
Sigh... what to do.
One good thing that came from the conversation though, is that I'm understanding why all of a sudden the pdoc has started hammering away at me that M needs a "program". Lately, every time things get rough her only answer is that he needs a "program". In the 6+ years she's been his pdoc I never once heard anything from her about his need for a program until about a month ago. During the past month she's mentioned it at least 4-5 times. She's brought it up so often that I got snappy with her about it... I was tired of her answer to everything always being a "program" and let her know that. (She apologized, but has continued to keep bringing it up.)
Honestly though, the homeschool issue could possibly be taken care of fairly easily... hopefully just by clearly stating, up front, that we are NOT interested in finding a program, that we believe homeschooling is the best option for our children, and if that is a problem for them they don't have to admit M.
And M is probably flexible enough right now to cope with a structure (the TEACCH model) that isn't the best fit for him. It does seem a little strange though that he (coming in as the child in need of this level of support!) would need to accomodate them, rather than things being the other way around...
The bottom line for me though, is that I don't think this is going to be helpful to M. I talked to K about it. Her shiny new psych degree, combined with her experience working with kids with mental illness, developmental delays, and behavioral problems, gives her a unique insight sometimes. She is strongly against M going into the NSCU. She sees the issue not of him having behavioral problems, but having a very serious mental illness that has been resistant to treatment. I agree with her take on the situation, which brings me back to this being a medication issue, not an issue that requires behavioral intervention.
I found the following paragraph while I was reading through an article this morning... It looks like treatment resistant sz is more common than I thought.
"The issue of treatment resistance [Treatment Resistant Schizophrenia] is of particular importance for practicing psychiatrists, because 10% to 30% of patients have little or no response to antipsychotic medications, and up to an additional 30% of patients have only partial responses to treatment."
Hmm... so why do we keep coming back to this as a behavioral or environmental issue?
Anyway, the NSCU intake person is working on finding out if our insurance will even pay for day treatment, and we have a tour scheduled for tomorrow afternoon.
The pdoc is gone (a family emergency came up) but I'm hoping to talk to her before I have to make a decision.
Sunday, November 11, 2007
Trying to figure something out...
.... feel free to offer advice.
M is on a waitlist for the "CES Waiver", which is basically a program that provides support to the most severely disabled children. Many of the supports and services it pays for are not things we need (like adaptive technology, and home modifications), but being on the waitlist also means that as soon as M reaches 18 he is guaranteed at least a minimum of adult supported living services (whereas people not receiving CES just go on another waitlist). Having him in place to receive adult services is important to me and a main reason why I worked to get him qualified for CES.
The organization (DP) that distrubutes state developmental disability funds (they also manage the CES waiver, and regular DD services) called me the other day to let me know that Michael was eligible for a new program... It's kind of a stepping stone from regular DD services (which he now receives) to CES. Through the program we can request a fairly substantial amount of money (I'd receive a check each month) to pay for allowed expenses having to do with M's disability.
It sounded great at first... they'll pay for respite, evaluations and assessments, maybe some educational materials, etc.
The catch is that because it's a new program, it will be audited. So I HAVE to spend the full amount each month (I can't save it to pay for something big, or hold it over from a month when we don't have many expenses to a month when we do), I have to have receipts for everything, I have to have letters from doctors documenting the need for the things I spend the money on, and the money can only be used for M. I understand all the rules, but we haven't even started the program and things are already seeming way too complicated for me.
Respite for example... I've called a couple of respite agencies and they are happy to come out and provide respite for M. One agency will cost a little more than we are given by DP (they charge $26. per hour).... and that's only for M. They will not watch R as well unless I pay another $26. per hour for her. That has to be paid out of pocket because we aren't allowed to use any of the DP money for R ... even though she qualifies for DD services... because she doesn't actually receive services, she's still on (yet another!) the waitlist. So I either take R with me and leave M at home (which doesn't sound much like respite to me!) or I can't afford to use the respite funds.
They will pay for educational materials only with a letter documenting the materials are needed because of M's developmental disability. So... I first have to make an appointment with an educational consultant, have her assess the situation, get her recommendations, then get a letter from her stating those recommendations... only then can I use any of the funds for school stuff.
It's starting to really stress me out. I don't want to find myself in the very strange position of feeling like I have to spend X amount of money quickly, before the end of the month, because of this program. I can guess there would be times when I'd be leaving the kids for an afternoon (oh, and I forgot... the respite has to be done in 4 hour blocks, nothing less) not because I had anywhere to go or anything to do, and when I'd really rather be home doing school or playing outside, just to spend the money. (And then I'd feel guilty for wasting state funds... money someone else could have REALLY used.)
So I'm thinking about turning the money down. Keeping things as they are...
Every mental health professional I know would think I'd lost my mind (LOL, in a clinical sense of course!) The concensus seems to be that I NEED respite to continue to care for M at home. And granted, there are days when I'd give anything for a short break from the constant vigilance, the food obsessions, and the conversations that don't make sense... But it seems like this program, which is designed to help families, might end up being more stressful then having no respite.
sigh.... I don't know what to do. This whole situation is making me crazy.
I'm interviewing a respite provider today, after that I think I'll put this on hold for a day or so... maybe taking a break from it for awhile will help me make a decision.
Anybody have any advice or suggestions?
M is on a waitlist for the "CES Waiver", which is basically a program that provides support to the most severely disabled children. Many of the supports and services it pays for are not things we need (like adaptive technology, and home modifications), but being on the waitlist also means that as soon as M reaches 18 he is guaranteed at least a minimum of adult supported living services (whereas people not receiving CES just go on another waitlist). Having him in place to receive adult services is important to me and a main reason why I worked to get him qualified for CES.
The organization (DP) that distrubutes state developmental disability funds (they also manage the CES waiver, and regular DD services) called me the other day to let me know that Michael was eligible for a new program... It's kind of a stepping stone from regular DD services (which he now receives) to CES. Through the program we can request a fairly substantial amount of money (I'd receive a check each month) to pay for allowed expenses having to do with M's disability.
It sounded great at first... they'll pay for respite, evaluations and assessments, maybe some educational materials, etc.
The catch is that because it's a new program, it will be audited. So I HAVE to spend the full amount each month (I can't save it to pay for something big, or hold it over from a month when we don't have many expenses to a month when we do), I have to have receipts for everything, I have to have letters from doctors documenting the need for the things I spend the money on, and the money can only be used for M. I understand all the rules, but we haven't even started the program and things are already seeming way too complicated for me.
Respite for example... I've called a couple of respite agencies and they are happy to come out and provide respite for M. One agency will cost a little more than we are given by DP (they charge $26. per hour).... and that's only for M. They will not watch R as well unless I pay another $26. per hour for her. That has to be paid out of pocket because we aren't allowed to use any of the DP money for R ... even though she qualifies for DD services... because she doesn't actually receive services, she's still on (yet another!) the waitlist. So I either take R with me and leave M at home (which doesn't sound much like respite to me!) or I can't afford to use the respite funds.
They will pay for educational materials only with a letter documenting the materials are needed because of M's developmental disability. So... I first have to make an appointment with an educational consultant, have her assess the situation, get her recommendations, then get a letter from her stating those recommendations... only then can I use any of the funds for school stuff.
It's starting to really stress me out. I don't want to find myself in the very strange position of feeling like I have to spend X amount of money quickly, before the end of the month, because of this program. I can guess there would be times when I'd be leaving the kids for an afternoon (oh, and I forgot... the respite has to be done in 4 hour blocks, nothing less) not because I had anywhere to go or anything to do, and when I'd really rather be home doing school or playing outside, just to spend the money. (And then I'd feel guilty for wasting state funds... money someone else could have REALLY used.)
So I'm thinking about turning the money down. Keeping things as they are...
Every mental health professional I know would think I'd lost my mind (LOL, in a clinical sense of course!) The concensus seems to be that I NEED respite to continue to care for M at home. And granted, there are days when I'd give anything for a short break from the constant vigilance, the food obsessions, and the conversations that don't make sense... But it seems like this program, which is designed to help families, might end up being more stressful then having no respite.
sigh.... I don't know what to do. This whole situation is making me crazy.
I'm interviewing a respite provider today, after that I think I'll put this on hold for a day or so... maybe taking a break from it for awhile will help me make a decision.
Anybody have any advice or suggestions?
Friday, November 2, 2007
...and another one bites the dust.
Do you remember that song? (from the 80's? 90's?) I think Queen did it.
It's been running through my head for days.
I'm cranky and getting ready to fire another therapist. He's the one with the intensive in-home team our county mental health organization has been sending out.
I used to like him. But he really blew it when he was out on Wednesday and I don't think I have the energy to try and fix what's wrong and make it work. He started the visit by talking about certain (inappropriate) behaviors that are "almost inevitable" in boys like M, once they hit adolescence. He said this in front of M, which floored me... talk about giving a kid "permission" to do something inappropriate! Maybe it IS very common behavior, maybe it IS almost inevitable, but you don't say that in front of the child in question! It's like telling a typical teen that it's inevitable that they are going to mess around with drugs... No sense even trying to stop the behavior because it's almost inevitable!
Anyway (my anger is still close to boiling over, can you tell?!) that started the appointment on a bad note. Then the therapist went on to say that he'd been thinking about the possible change in M's diagnosis, thinking about what that might mean for M's and our future, and we should probably talk about that.
(Ummm... no. I've got enough to think about right now.)
The final nail in the coffin of his involvement with our family was when he, three separate times, corrected M for not responding quickly enough to something I'd told him to do.
You know... I don't expect instant obedience from my kids, this therapist was not at my house to address obedience issues, and the therapist... as a guest in my home... had no right to overstep the boundaries in terms of the parent/child relationship. In short it was none of his business.
So I'm done with him.
I know that none of these things are terrible or insurmountable problems, but this therapist has been coming to our house for a couple of months now with little to no direction to the sessions, he seems to think the situation is hopeless anyway, and I don't want to take a chance with him giving M messages that I don't want him to give.
I'm hoping we can keep our case manager when I fire the therapist... I really like her. (At least I think I do, I seem to be a rather poor judge of character lately...)
We made it through Halloween pretty well. The morning was rough because both kids were so tired (M was up and down all night, and R was up for the day by 2:30 am), but the afternoon was much better. We went for lunch with some friends from the homeschool group then went to the homeschool group Halloween party.
We spent a quiet evening eating candy and watching a movie... our only trick or treaters were the grandkids who stopped by to show us their beautiful (granddaughter) and scary (grandson) costumes.
Here is R, last week, carving her jack-o-lantern...
M and R ready to go to the party. They were 50's kids, I even had M's hair slicked back. Well... slicked back as much as possible with all his cowlicks!
R at the party wrapping her friend "B" as a mummy.
R and B have known each other since they were babies... B's mom came to the first FAS support group meeting we held (back in Jan of '96) and continued to be an active part of the group for the entire 10 years the group met! B has recently begun homeschooling again (after several years in school) and joined our group. R is in heaven! The girls could almost be twins, they like the same things, and have that comfortable familiarity of friends who can't remember a time they didn't know each other...
We've spent the past couple of days just settling back into a regular routine... it's been very nice. I've got a couple more pictures I want to post but they'll have to wait, quiet time is almost over... (so I'd better run!)
I'm cranky and getting ready to fire another therapist. He's the one with the intensive in-home team our county mental health organization has been sending out.
I used to like him. But he really blew it when he was out on Wednesday and I don't think I have the energy to try and fix what's wrong and make it work. He started the visit by talking about certain (inappropriate) behaviors that are "almost inevitable" in boys like M, once they hit adolescence. He said this in front of M, which floored me... talk about giving a kid "permission" to do something inappropriate! Maybe it IS very common behavior, maybe it IS almost inevitable, but you don't say that in front of the child in question! It's like telling a typical teen that it's inevitable that they are going to mess around with drugs... No sense even trying to stop the behavior because it's almost inevitable!
Anyway (my anger is still close to boiling over, can you tell?!) that started the appointment on a bad note. Then the therapist went on to say that he'd been thinking about the possible change in M's diagnosis, thinking about what that might mean for M's and our future, and we should probably talk about that.
(Ummm... no. I've got enough to think about right now.)
The final nail in the coffin of his involvement with our family was when he, three separate times, corrected M for not responding quickly enough to something I'd told him to do.
You know... I don't expect instant obedience from my kids, this therapist was not at my house to address obedience issues, and the therapist... as a guest in my home... had no right to overstep the boundaries in terms of the parent/child relationship. In short it was none of his business.
So I'm done with him.
I know that none of these things are terrible or insurmountable problems, but this therapist has been coming to our house for a couple of months now with little to no direction to the sessions, he seems to think the situation is hopeless anyway, and I don't want to take a chance with him giving M messages that I don't want him to give.
I'm hoping we can keep our case manager when I fire the therapist... I really like her. (At least I think I do, I seem to be a rather poor judge of character lately...)
We made it through Halloween pretty well. The morning was rough because both kids were so tired (M was up and down all night, and R was up for the day by 2:30 am), but the afternoon was much better. We went for lunch with some friends from the homeschool group then went to the homeschool group Halloween party.
We spent a quiet evening eating candy and watching a movie... our only trick or treaters were the grandkids who stopped by to show us their beautiful (granddaughter) and scary (grandson) costumes.
Here is R, last week, carving her jack-o-lantern...
M and R ready to go to the party. They were 50's kids, I even had M's hair slicked back. Well... slicked back as much as possible with all his cowlicks!
R at the party wrapping her friend "B" as a mummy.
R and B have known each other since they were babies... B's mom came to the first FAS support group meeting we held (back in Jan of '96) and continued to be an active part of the group for the entire 10 years the group met! B has recently begun homeschooling again (after several years in school) and joined our group. R is in heaven! The girls could almost be twins, they like the same things, and have that comfortable familiarity of friends who can't remember a time they didn't know each other...
We've spent the past couple of days just settling back into a regular routine... it's been very nice. I've got a couple more pictures I want to post but they'll have to wait, quiet time is almost over... (so I'd better run!)
Friday, October 26, 2007
.... feel free to offer advice.
M is on a waitlist for the "CES Waiver", which is basically a program that provides support to the most severely disabled children. Many of the supports and services it pays for are not things we need (like adaptive technology, and home modifications), but being on the waitlist also means that as soon as M reaches 18 he is guaranteed at least a minimum of adult supported living services (whereas people not receiving CES just go on another waitlist).
Having him in place to receive adult services is important to me and a main reason why I worked to get him qualified for CES. The organization (DP) that distrubutes state developmental disability funds (they also manage the CES waiver, and regular DD services) called me the other day to let me know that M was eligible for a new program... It's kind of a stepping stone from regular DD services (which he now receives) to CES. Through the program we can request a fairly substantial amount of money (I'd receive a check each month) to pay for allowed expenses having to do with M's disability.
It sounded great at first... they'll pay for respite, evaluations and assessments, maybe some educational materials, etc. The catch is that because it's a new program, it will be audited. So I HAVE to spend the full amount each month (I can't save it to pay for something big, or hold it over from a month when we don't have many expenses to a month when we do), I have to have receipts for everything, I have to have letters from doctors documenting the need for the things I spend the money on, and the money can only be used for M.
I understand all the rules, but we haven't even started the program and things are already seeming way too complicated for me. Respite for example... I've called a couple of respite agencies and they are happy to come out and provide respite for M. One agency will cost a little more than we are given by DP (they charge $26. per hour).... and that's only for M. They will not watch R as well unless I pay another $26. per hour for her. That has to be paid out of pocket because we aren't allowed to use any of the DP money for R ... even though she qualifies for DD services... because she doesn't actually receive services, she's still on (yet another!) the waitlist. So I either take R with me and leave M at home (which doesn't sound much like respite to me!) or I can't afford to use the respite funds.
They will pay for educational materials only with a letter documenting the materials are needed because of M's developmental disability. So... I first have to make an appointment with an educational consultant, have her assess the situation, get her recommendations, then get a letter from her stating those recommendations... only then can I use any of the funds for school stuff.
It's starting to really stress me out. I don't want to find myself in the very strange position of feeling like I have to spend X amount of money quickly, before the end of the month, because of this program. I can guess there would be times when I'd be leaving the kids for an afternoon (oh, and I forgot... the respite has to be done in 4 hour blocks, nothing less) not because I had anywhere to go or anything to do, and when I'd really rather be home doing school or playing outside, just to spend the money. (And then I'd feel guilty for wasting state funds... money someone else could have REALLY used.)
So I'm thinking about turning the money down. Keeping things as they are... Every mental health professional I know would think I'd lost my mind (LOL, in a clinical sense of course!) The concensus seems to be that I NEED respite to continue to care for M at home. And granted, there are days when I'd give anything for a short break from the constant vigilance, the food obsessions, and the conversations that don't make sense...
But it seems like this program, which is designed to help families, might end up being more stressful then having no respite.
sigh.... I don't know what to do. This whole situation is making me crazy. I'm interviewing a respite provider today, after that I think I'll put this on hold for a day or so... maybe taking a break from it for awhile will help me make a decision.
Anybody have any advice or suggestions?
M is on a waitlist for the "CES Waiver", which is basically a program that provides support to the most severely disabled children. Many of the supports and services it pays for are not things we need (like adaptive technology, and home modifications), but being on the waitlist also means that as soon as M reaches 18 he is guaranteed at least a minimum of adult supported living services (whereas people not receiving CES just go on another waitlist).
Having him in place to receive adult services is important to me and a main reason why I worked to get him qualified for CES. The organization (DP) that distrubutes state developmental disability funds (they also manage the CES waiver, and regular DD services) called me the other day to let me know that M was eligible for a new program... It's kind of a stepping stone from regular DD services (which he now receives) to CES. Through the program we can request a fairly substantial amount of money (I'd receive a check each month) to pay for allowed expenses having to do with M's disability.
It sounded great at first... they'll pay for respite, evaluations and assessments, maybe some educational materials, etc. The catch is that because it's a new program, it will be audited. So I HAVE to spend the full amount each month (I can't save it to pay for something big, or hold it over from a month when we don't have many expenses to a month when we do), I have to have receipts for everything, I have to have letters from doctors documenting the need for the things I spend the money on, and the money can only be used for M.
I understand all the rules, but we haven't even started the program and things are already seeming way too complicated for me. Respite for example... I've called a couple of respite agencies and they are happy to come out and provide respite for M. One agency will cost a little more than we are given by DP (they charge $26. per hour).... and that's only for M. They will not watch R as well unless I pay another $26. per hour for her. That has to be paid out of pocket because we aren't allowed to use any of the DP money for R ... even though she qualifies for DD services... because she doesn't actually receive services, she's still on (yet another!) the waitlist. So I either take R with me and leave M at home (which doesn't sound much like respite to me!) or I can't afford to use the respite funds.
They will pay for educational materials only with a letter documenting the materials are needed because of M's developmental disability. So... I first have to make an appointment with an educational consultant, have her assess the situation, get her recommendations, then get a letter from her stating those recommendations... only then can I use any of the funds for school stuff.
It's starting to really stress me out. I don't want to find myself in the very strange position of feeling like I have to spend X amount of money quickly, before the end of the month, because of this program. I can guess there would be times when I'd be leaving the kids for an afternoon (oh, and I forgot... the respite has to be done in 4 hour blocks, nothing less) not because I had anywhere to go or anything to do, and when I'd really rather be home doing school or playing outside, just to spend the money. (And then I'd feel guilty for wasting state funds... money someone else could have REALLY used.)
So I'm thinking about turning the money down. Keeping things as they are... Every mental health professional I know would think I'd lost my mind (LOL, in a clinical sense of course!) The concensus seems to be that I NEED respite to continue to care for M at home. And granted, there are days when I'd give anything for a short break from the constant vigilance, the food obsessions, and the conversations that don't make sense...
But it seems like this program, which is designed to help families, might end up being more stressful then having no respite.
sigh.... I don't know what to do. This whole situation is making me crazy. I'm interviewing a respite provider today, after that I think I'll put this on hold for a day or so... maybe taking a break from it for awhile will help me make a decision.
Anybody have any advice or suggestions?
Thursday, September 20, 2007
intake, caterpillars, and other random stuff
After avoiding our county mental health organization for years (the one that provides mental health services through M's Medicaid); partly because the kid's pdoc told me to, and partly because I'd had some negative interactions with them myself, I finally broke down and contacted them again.
When I first called them a year ago they said that unless we were willing to use their pdoc (which I'm not) they could not provide any services to M. (It was all or nothing....) They also told me that they had no one on staff who had experience with FASD, so I gave up on them providing any support.
When things with M got so difficult a few weeks ago, I called the organization (BHI) who oversees ADMH (who provides the care through Medicaid) and complained that Medicaid was doing NOTHING to provide services to this very disabled child. I must have stumbled upon the right person to talk to at BHI... She not only said she'd call ADMH and talk to them for me, she even gave me her cell phone number and said to call if I had any more problems with them! I heard from ADMH within just a few hours, talking to a supervisor there who said they'd be happy to bend the rules for us (so we could keep the same pdoc) and that if they couldn't provide what we needed through their organization, they'd pay for a private therapist or program. In other words they did a 180 degree turn around and seemed willing to bend over backwards for us.
We did the intake a few weeks ago, and I was pleasantly surprised by the therapists who did it. One was the head of child and family services at ADMH, the other a regular intake clinician. They were both wonderful... understanding, patient with the kids, and very supportive of what we are doing (in homeschooling, keeping M out of the hospital, etc). They referred us to their "intensive in-home" team and we were assigned a case worker. The in-home therapist and the case worker came to the house yesterday to meet M and talk... Once again I was very pleasantly surprised... The case manager is VERY young, but very sweet and trying to be so helpful. She even followed M around letting him show her everything, so I could talk to the therapist without M listening in. And I even liked the therapist too! (I've been chewing up and spitting out therapists for weeks... it's amazing how many flaky people become psychologists!)
The psychologist "J" is older, obviously experienced, and very "real". He doesn't insist on being called "Dr. ___", his conversation doesn't get completely lost in psycho-babble, and he reminds me a little of "Columbo" (remember that show?). He obviously dresses for comfort, in kind of a rumpled way, and I noticed there was a whole in the knee of his pants... which he'd carefully patched. He seemed to "get it" right away, in terms of M and even has experience with FASD! I felt like I won the lottery... He's going to call back so we can talk more, and he might send "K" (the case manager) out for a few more visits... Not to gather information, but just to spend time with M so I can have a break now and then.
I'm excited... and hopeful that this is the beginning of getting some support to help us through M's inevitable rough spells. On the flip side though, I got cranky and fired the kid's pdoc. It's only a temporary firing of course... sometimes I just need a break from psychiatry. She's been so busy lately that she's been promising for a month to call (because both kids are really struggling right now and we need to talk about what to do...), but never calls. It's hard when she's busy like this because she tends to pop in and out of our lives. Just when I get used to her help, she drops out of sight again. It's easier to just take a break from her and reconnect when she has time to really BE there for the kids.
******************************************************************** Now for the interesting part... the caterpillars!
R has been finding monarch caterpillars down in our gully. She was so excited that she brought some home and we've been feeding them milkweed and watching them form their chrysalis'. Our first butterfly should emerge sometime this weekend (if I figured the timing correctly).
Here is one of our caterpillars... (R named the first two caterpillars Romeo and Juliet, but the last few she found have gone un-named.) He is probably about ready to stop eating and form his chrysalis.
One of the caterpillars hanging upside down "like a J" from the silk button he made, getting ready to make his chrysalis.
His chrysalis is finished. As it closer to time for him to emerge it will darken...
Here are Romeo and Juliet's chrysalis' with the rest of the caterpillars munching away down below.
This generation of monarchs (this should be the fourth generation of monarchs since early spring) are the ones who will migrate to Mexico for the winter... Unlike the generations of monarchs that emerged earlier in the summer, these butterfly's reproductive systems are not fully developed, so they won't breed and die out right away. Instead they will migrate south, reaching Mexico by December. They will "hibernate" there until February when the weather warms, then they will mate and begin their journey back north.
I'm excited for the butterflies to emerge so we can let them go, imagining the long journey they have ahead of them.
When I first called them a year ago they said that unless we were willing to use their pdoc (which I'm not) they could not provide any services to M. (It was all or nothing....) They also told me that they had no one on staff who had experience with FASD, so I gave up on them providing any support.
When things with M got so difficult a few weeks ago, I called the organization (BHI) who oversees ADMH (who provides the care through Medicaid) and complained that Medicaid was doing NOTHING to provide services to this very disabled child. I must have stumbled upon the right person to talk to at BHI... She not only said she'd call ADMH and talk to them for me, she even gave me her cell phone number and said to call if I had any more problems with them! I heard from ADMH within just a few hours, talking to a supervisor there who said they'd be happy to bend the rules for us (so we could keep the same pdoc) and that if they couldn't provide what we needed through their organization, they'd pay for a private therapist or program. In other words they did a 180 degree turn around and seemed willing to bend over backwards for us.
We did the intake a few weeks ago, and I was pleasantly surprised by the therapists who did it. One was the head of child and family services at ADMH, the other a regular intake clinician. They were both wonderful... understanding, patient with the kids, and very supportive of what we are doing (in homeschooling, keeping M out of the hospital, etc). They referred us to their "intensive in-home" team and we were assigned a case worker. The in-home therapist and the case worker came to the house yesterday to meet M and talk... Once again I was very pleasantly surprised... The case manager is VERY young, but very sweet and trying to be so helpful. She even followed M around letting him show her everything, so I could talk to the therapist without M listening in. And I even liked the therapist too! (I've been chewing up and spitting out therapists for weeks... it's amazing how many flaky people become psychologists!)
The psychologist "J" is older, obviously experienced, and very "real". He doesn't insist on being called "Dr. ___", his conversation doesn't get completely lost in psycho-babble, and he reminds me a little of "Columbo" (remember that show?). He obviously dresses for comfort, in kind of a rumpled way, and I noticed there was a whole in the knee of his pants... which he'd carefully patched. He seemed to "get it" right away, in terms of M and even has experience with FASD! I felt like I won the lottery... He's going to call back so we can talk more, and he might send "K" (the case manager) out for a few more visits... Not to gather information, but just to spend time with M so I can have a break now and then.
I'm excited... and hopeful that this is the beginning of getting some support to help us through M's inevitable rough spells. On the flip side though, I got cranky and fired the kid's pdoc. It's only a temporary firing of course... sometimes I just need a break from psychiatry. She's been so busy lately that she's been promising for a month to call (because both kids are really struggling right now and we need to talk about what to do...), but never calls. It's hard when she's busy like this because she tends to pop in and out of our lives. Just when I get used to her help, she drops out of sight again. It's easier to just take a break from her and reconnect when she has time to really BE there for the kids.
******************************************************************** Now for the interesting part... the caterpillars!
R has been finding monarch caterpillars down in our gully. She was so excited that she brought some home and we've been feeding them milkweed and watching them form their chrysalis'. Our first butterfly should emerge sometime this weekend (if I figured the timing correctly).
Here is one of our caterpillars... (R named the first two caterpillars Romeo and Juliet, but the last few she found have gone un-named.) He is probably about ready to stop eating and form his chrysalis.
One of the caterpillars hanging upside down "like a J" from the silk button he made, getting ready to make his chrysalis.
His chrysalis is finished. As it closer to time for him to emerge it will darken...
Here are Romeo and Juliet's chrysalis' with the rest of the caterpillars munching away down below.
This generation of monarchs (this should be the fourth generation of monarchs since early spring) are the ones who will migrate to Mexico for the winter... Unlike the generations of monarchs that emerged earlier in the summer, these butterfly's reproductive systems are not fully developed, so they won't breed and die out right away. Instead they will migrate south, reaching Mexico by December. They will "hibernate" there until February when the weather warms, then they will mate and begin their journey back north.
I'm excited for the butterflies to emerge so we can let them go, imagining the long journey they have ahead of them.
Thursday, August 23, 2007
a taste of fall (and some rambling and whining)
Brrr.... it's cold this evening! After an gray, overcast day, and rainstorms this evening, it's cooled down to a crisp (for August!) 55 degrees and I'm enjoying a nice hot mug of cocoa for the first time in weeks.
I love the fall, and have been looking forward to it... but I have to admit, when I walked through the cool evening to the barn tonight and started thinking about breaking ice from the watering trough, and trudging through snow drifts to get to the barn, I also started counting my blessings that we probably have another month to six weeks before it starts to get very cold.
I've been canning and freezing the riches from our garden, and now have about 20 pts of tomatoes, 8 pts of bread and butter pickles, and a couple pints of pickled jalapenos in the cupboard, as well as green beans and (WAY too much) zucchini in the freezer. It's been a lot of work, but it's worth it to get to enjoy the taste of garden veggies this winter.
The tomatoes are still producing, and the green beans are just getting started. The cucumbers and zucchini seem to be slowing down (hopefully) and we have at least a half dozen good sized pumpkins on the vine, just waiting for Halloween.
I spent this morning canning and this afternoon making more phone calls. I'm still trying to track down some in-home support for M. I haven't found anything great yet, but I have gotten a good education about what's out there... I found one program that is very well known in this area. They send "trainers" into the homes of people with developmental disabilities to help the family learn to deal with problematic behaviors. The trainers counsel the family and actually do some family therapy (this I learned speaking to families who have used this organization). We've started doing an intake with them, and during this process I asked about the qualifications of their trainers. The director of the program said they don't have any PhD level trainers, but some have a Masters Degree. She said it's hard for them to keep trainers with graduate degrees however, because they can't afford to pay much. (We would pay $50. an hour for the trainers, but much of that is eaten up by overhead). So I asked what the minimum qualifications for trainers are. The answer floored me. Trainers are only required to have a GED, preferably with some work experience.
What?!
Why would I pay $50. an hour for someone with no qualifications to come into our home and work with M? (shaking my head in puzzlement) That's just crazy!
I also called another organization that I've been avoiding for years. It's director, a psychologist, called me several years ago and asked me to come and train his staff on FASD. I said I would but ended up having an emergency with M and having to cancel (not last minute, I gave him some notice). I offered to reschedule but he was really snippy about it, and wouldn't reschedule the training. I've hesitated to call this organization, even though they provide in-home services, because I figured they wouldn't have called me to train if they knew more than I do about FASD. That was several years ago though (and I'm running out of places to call), so I decided to give them a call. The same psychologist/director who had been so snippy to me answered the phone (hmmm... no receptionist, money must be tight over there). I didn't tell him who I was, just asked about the services they offer. He was arrogant and borderline rude in answering my questions and started the conversation by saying they work with many, many, kids just like M. (With the attitude of how could I be so stupid to even ask that question!) When I said that I was surprised by that because childhood onset schizophrenia is so rare, and having it co-occurring with FAS is even rarer, he questioned the schizophrenia diagnosis, saying it might not be accurate. He was so full of himself he was funny, and I couldn't help pushing his buttons a little... asking questions specific to FASD and, when he answered arrogantly and patronizingly (while at the same time showing his ignorance), calling him on it. Finally he stated that he "knew of no reason why specific interventions are needed for FASD" (versus other developmental disabilities) I thanked him, told him I'd found out all I needed to know, and hung up.
Hmmm... maybe I should call back and offer to train him and his staff! ;) It sounds like they need it...
I'm still finding mostly dead ends in my search for supports and services for M, but I am learning more about what's out there, and it's been a good reminder to me that what we are doing some good stuff here at home. Our "program" is looking pretty good compared to the "real" programs I've found out there!
We work at the library tomorrow morning, and have a co-op class afterwards. I'm hoping it warms up, the class is at the park and a little sunshine would be very nice! The kids will be learning how to use a Chinese jumprope, so it ought to be exciting. :)
I love the fall, and have been looking forward to it... but I have to admit, when I walked through the cool evening to the barn tonight and started thinking about breaking ice from the watering trough, and trudging through snow drifts to get to the barn, I also started counting my blessings that we probably have another month to six weeks before it starts to get very cold.
I've been canning and freezing the riches from our garden, and now have about 20 pts of tomatoes, 8 pts of bread and butter pickles, and a couple pints of pickled jalapenos in the cupboard, as well as green beans and (WAY too much) zucchini in the freezer. It's been a lot of work, but it's worth it to get to enjoy the taste of garden veggies this winter.
The tomatoes are still producing, and the green beans are just getting started. The cucumbers and zucchini seem to be slowing down (hopefully) and we have at least a half dozen good sized pumpkins on the vine, just waiting for Halloween.
I spent this morning canning and this afternoon making more phone calls. I'm still trying to track down some in-home support for M. I haven't found anything great yet, but I have gotten a good education about what's out there... I found one program that is very well known in this area. They send "trainers" into the homes of people with developmental disabilities to help the family learn to deal with problematic behaviors. The trainers counsel the family and actually do some family therapy (this I learned speaking to families who have used this organization). We've started doing an intake with them, and during this process I asked about the qualifications of their trainers. The director of the program said they don't have any PhD level trainers, but some have a Masters Degree. She said it's hard for them to keep trainers with graduate degrees however, because they can't afford to pay much. (We would pay $50. an hour for the trainers, but much of that is eaten up by overhead). So I asked what the minimum qualifications for trainers are. The answer floored me. Trainers are only required to have a GED, preferably with some work experience.
What?!
Why would I pay $50. an hour for someone with no qualifications to come into our home and work with M? (shaking my head in puzzlement) That's just crazy!
I also called another organization that I've been avoiding for years. It's director, a psychologist, called me several years ago and asked me to come and train his staff on FASD. I said I would but ended up having an emergency with M and having to cancel (not last minute, I gave him some notice). I offered to reschedule but he was really snippy about it, and wouldn't reschedule the training. I've hesitated to call this organization, even though they provide in-home services, because I figured they wouldn't have called me to train if they knew more than I do about FASD. That was several years ago though (and I'm running out of places to call), so I decided to give them a call. The same psychologist/director who had been so snippy to me answered the phone (hmmm... no receptionist, money must be tight over there). I didn't tell him who I was, just asked about the services they offer. He was arrogant and borderline rude in answering my questions and started the conversation by saying they work with many, many, kids just like M. (With the attitude of how could I be so stupid to even ask that question!) When I said that I was surprised by that because childhood onset schizophrenia is so rare, and having it co-occurring with FAS is even rarer, he questioned the schizophrenia diagnosis, saying it might not be accurate. He was so full of himself he was funny, and I couldn't help pushing his buttons a little... asking questions specific to FASD and, when he answered arrogantly and patronizingly (while at the same time showing his ignorance), calling him on it. Finally he stated that he "knew of no reason why specific interventions are needed for FASD" (versus other developmental disabilities) I thanked him, told him I'd found out all I needed to know, and hung up.
Hmmm... maybe I should call back and offer to train him and his staff! ;) It sounds like they need it...
I'm still finding mostly dead ends in my search for supports and services for M, but I am learning more about what's out there, and it's been a good reminder to me that what we are doing some good stuff here at home. Our "program" is looking pretty good compared to the "real" programs I've found out there!
We work at the library tomorrow morning, and have a co-op class afterwards. I'm hoping it warms up, the class is at the park and a little sunshine would be very nice! The kids will be learning how to use a Chinese jumprope, so it ought to be exciting. :)
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